holiday has sadly come to an end, but we have made some wonderful memories 💙.
don’t know if it’s because I wasn’t at home with my usual routine and things I
am used to every day, but I really did notice my vision loss whilst I was away.
Watching seagulls fly in and out of my blind spots, trying to look for the seal
whilst everyone else was already watching him bob around the harbour, trying to
work out which was my husband and Harvey body boarding only being able to go by
their movements and mannerisms that I am used to, to pick them out of the
crowd, struggling to see creatures in the rock pools, just lots of little
things like this. The one thing that really bothered me was when Greg was
poorly and Harvey, Sawyer and I went out to the beach on our own in the
evenings. It took me a long time to focus on anything and I could barely make
out the steps down to the beach which frightened me a bit as they were
extremely steep. I felt a lack of confidence in myself, but I didn’t let it
show to Harvey and I carried on making memories regardless.
holiday has made me realise though how visual life is. A lot of our holiday
chat was things we could see or what we had seen, and this has panicked me a
lot. It has made me think about what I will miss out on when my vision gets
worse and will I get left behind? Will people remember to talk to me about
other things or have enough patience to explain things in more detail? Whatever
happens in the future, I just want people to know that this world is
intimidating when your vision starts to fade and that all of us with vision
loss are just trying our best to carry on living but may just need a little
more patience and a little bit more of your time to help us enjoy this life
with you ❤️.
This picture was taken last August in Croatia. I felt like my life was very surreal at this point after my Stargardts diagnosis. I felt pretty lost to be honest and panicked that I needed to see more and experience more of this world that we live in, before my eyesight declined. In hindsight, I would love to see more beautiful places and travelling does make me happy, but I get just as much joy at home daily watching my beautiful boys grow.
It has taken me a lot of time to realise that there is joy in every day, whether it be at home or somewhere else. We don’t have to just look forward to experiencing the big things, but make sure we find some joy in all of the little things we do too, after all it’s the little things that make the biggest difference x
Last week was half term and my husband had booked some time off of work. We have a jobs list for the house as long as I care to admit, so we debated whether this time and money should be spent on that. It’s not that anything major needs doing, it could just do with re painting in most of the rooms and some of our furniture could do with being replaced. The thing is, the house doesn’t excite me and as long as it functions, to me, why replace it? So, with that in mind I started looking for a holiday. We thought about going abroad, but as Greg was only off for 5 days, I thought of places I would like to visit here in the U.K. I have always wanted to visit Brixham in Devon as we enjoy little seaside harbour towns and Harvey loves to go crabbing, so we booked a lovely little apartment that looked out onto the boats at Brixham Marina.
Me and my husband, Greg x
If losing my vision has taught me anything, it is that living for now is so important. I don’t know how long I will keep this vision that I still have for and making the most of the time we all have together is so important to me. I also want Harvey to experience life and by putting all of our money into our house, he won’t be doing that. I want him to want to visit different places and gain new experiences and memories. I can’t even remember the colour of the carpet we had when I was his age, but I remember our holiday to Idaho where we visited Yellowstone national park and rode a horse and carriage up the mountain and had a camp fire tea. I’m so grateful I had holidays like that growing up and was so lucky to see what I did before I found out about Stargardts. Our holidays aren’t extravagant holidays by any stretch, but the more of them I can give Harvey and the quality time it gives us, then we will keep doing them. I am also generally a happier carefree mum when I am away. I don’t know why, but out of routine and things I see every day, I don’t notice my vision loss as much, or it doesn’t consume me as much as it does here. I wonder if when I am at home, I get into a thinking pattern and routine and everyday things sets off my worry like a trigger for my vision loss. When I am away from home, I get lost in the moment more and don’t seem to dwell as much.
Harvey by the Sea
The holiday flew by, and we were soon home before we knew it, and the house jobs list is still the same, but we have come home with memories and fun times and I got to see Harvey enjoying himself jumping through the choppy waves, pulling up 13 crabs in his net in one go, grinning from ear to ear on a steam train as we rode along the coast in one, looking lovingly at his ice-cream, helping him find life in rock pools and digging big holes in the sand. That’s what life is all about, the painting and furniture replacing can wait, after all, the dirty little hand prints that need covering are the ones that I will be so heartbroken over when I can no longer see them anymore ♥️.
I had wanted to visit Croatia about 15 years ago. I remember going into the travel agents when I was 18 and the lady had no clue what I was on about and had never heard of it, so after that I ended up in Cyprus.
After my diagnosis and thinking of places I would really like to see whilst my vision was still good enough, I got on the internet and started looking up beautiful places. Croatia came up and my memories of how desperate I had been to go, all came back to me. It was only a two-hour flight too, so we booked it.
Croatia was a visual delight! The landscape was so pretty, and the water was crystal clear and blue, you could stand deep in the sea and still be able to watch the fish swimming at the bottom. We hired a car one day and my husband drove me to Rovinj, an amazing town in Croatia, it reminded me of Malcesine in Lake Garda, it was stunning. It had quirky little shops on cobbled streets with amazing colourful buildings that were sat right on the sea. We also hired a little boat on another day and drove all around the coast and into the little coves, it was stunning.
When we got home, and I was looking at all our memories in pictures, I noticed one from the day of our boat trip where I am swimming in the sea. I noticed that it was a completely genuine and happy smile, I haven’t seen that smile much, if at all in pictures over the last year after I found out about my Stargardts, and although I felt sad about that, I was so grateful that I had that moment in Croatia and for a while all my fears and worries had disappeared, even for a few seconds 💙 that’s what holidays are for after all. x
When I was diagnosed with Stargardts, I knew there and then that I wanted to see more and visit more beautiful places before my vision deteriorated further. I started to make a list of places that were high priority and Lake Garda was one of them. In April my husband surprised me by suggesting we go for my 33rd birthday, I was so excited! It gave me something to focus on and I began searching for somewhere to stay! We settled on a beautiful hotel in Malcesine in the mountainous end of the lake, the pictures on line looked perfect.
I love travelling and holidays, so my suitcase was packed a couple of weeks before we were due to go. I had never been to Italy before, but as soon as we stepped off the plane, I knew I was going to love it! I will be honest and say, I didn’t realise Lake Garda was actually in a mountain range, I thought it had a couple if mountains but was mainly hilly, how wrong was I! Before my diagnosis, I had struggled a lot with anxiety and small enclosed spaces with lots of people was my absolute nightmare, but I braved it and took a tiny cable car all the way up to the mountains, because I knew what was up the top would be so worth it. I could not believe the beauty once up there and I will hold that memory with me forever ❤️ I felt so grateful to be there and to be able to see all that I could.
We hear it said a lot about how precious our eyesight is, but until you are told you are losing it, nobody can ever truly realise the full meaning behind a saying like that. For me this trip wasn’t just about seeing Lake Garda in all its beauty though, it was also about experiencing new things with my family. The joy on my little boy’s face when he found an unusual looking Italian bee in a flower, seeing his little mucky face covered in another flavoured ice-cream he hadn’t tried before. It’s all the small things as well, that make up the big things, the important things, the things we cherish the most 💜